All posts by CHOC Children's

Mental health resources to share with patients, families during COVID-19

For many providers, the COVID-19 pandemic has prompted a flurry of tough questions from patients and their families: How do I explain this to my children? How do I help my child understand why their birthday party is canceled? How do I maintain normalcy while my child is out of school and stuck at home?

If you’re also fielding these questions from worried caregivers, this compilation of resources from CHOC Children’s — with more to come — can help address these questions and more:

How to teach kids resilience throughout COVID-19

Establishing structure and routine for kids during COVID-19

Activity ideas for kids during COVID-19

7 ways to help reduce Coronavirus (COVID-19) anxiety

How to talk to kids about disappointment during COVID-19

Find more information to share with patients and families about COVID-19 at choc.org/coronavirus.

CHOC nurses join pediatric “Hack-a-thon”

Hacking and pediatric healthcare might be an unlikely pairing – but a recent event combined the two, drawing a range of multidisciplinary experts, including six CHOC Children’s nurses, together to create disruptive solutions for pediatric and neonatal healthcare.

Clinicians, physicians, engineers, data scientists, designers and entrepreneurs gathered at the three-day “Hack-a-thon,” hosted by MIT Hacking Medicine and the Innovation Institute at the Innovation Center in Newport Beach, to develop tech solutions and fast-track development of value-driven concepts.  

The CHOC Nursing Research and Innovation Council helped to facilitate nurse involvement in this event, held Feb. 7 to 9. Six nurses actively participated on separate interdisciplinary teams: Donna Bigani, Erin Rentch, Pernilla Fridolfsson, Kylie Castro, Wanda Rodriguez and Jennifer Hayakawa.

The team led by Kylie won second place and $750 for their innovation related to improving the care of patients with autism spectrum disorder.

“The process was nerve-wracking and very tiring, but at the end of the weekend it was completely worth it and an amazing learning experience,” Kylie said. “It was so interesting stepping into another world, learning to speak another language – or what felt like another language – and being pushed outside my comfort zone.”

Several CHOC specialists as well as other staff also participated in the event.

Learn more about nursing research at CHOC Children’s.

Coronavirus (COVID-19): what providers should know

The spread of Coronavirus (COVID-19) is changing rapidly. Follows is a list of resources to help providers stay abreast of the situation – and support their patients and families.

Local, state and federal resources, information

Provider guidance

The most current data

  • COVID-19 global cases dashboard by Johns Hopkins CSSE

Resources to share with patients and families

  • Information from CHOC Children’s experts, including a COVID-19 FAQ, tips for coping with anxiety, tips for parents of immunocompromised children, and hand-washing tips.

Printable materials for practices

Ocean Institute brings unique experience to CHOC mental health patients

Patients in the CHOC Children’s Cherese Mari Laulhere Mental Health Inpatient Center (MHIC) have a friend in Dana Point’s Ocean Institute, a non-profit aimed at educating SoCal youth.

The organization’s mission, “Using the ocean as our classroom, we inspire children to learn,” comes to life in the MHIC, where patients age 3-17 receive hands-on maritime education. It is a unique partnership – one that both patients and staff are passionate about.

After volunteering at CHOC for a long time with medical patients, Ocean Institute Distance Learning Programs Coordinator Danelle Hickman met with MHIC leadership to determine if bringing the Ocean Institute program onto the mental health unit would be feasible. It was a unique idea; few inpatient centers have any volunteers, let alone regular visits from a group of them. But despite the special considerations, everyone was determined to make it work.

After mental health-specific training, members of the Ocean Institute began their valued work in the MHIC in early 2019. Led by Hickman, the STEAM-inspired (science, technology, engineering, art and mathematics) program includes discussion, questions and answers, hands-on education, activities and art projects. The group also brings in sea animals for patients to see and touch.

Patients in the Cherese Mari Laulhere Mental Health Inpatient Center are able to see and touch live sea creatures during Ocean Institute lessons.

Hickman is passionate about offering patients an engaging experience.

“Our mission is to serve students from all walks of life. We are proud to provide programs for CHOC patients. This fills a community need for more than ‘feel-good’ programs; these powerful educational adventures aim to be life-changing.”

In an early December visit, their eighth of the year, Hickman and two Ocean Institute volunteers began the lesson by asking patients and staff to introduce themselves and discuss their favorite ocean animals. Answers around the table included sharks, whales, sea otters, sea turtles, seals and others. One patient chose jellyfish because of a memorable scene in the Disney-Pixar film “Finding Nemo.” Another patient chose dolphins, finding them “graceful but powerful when they need to be.”

The team then presented the patients with three varieties of live sea star and two preserved sea turtles. The group passed around the animals, noting some of them felt soft and others rough. The observation turned into a discussion about the difference between vertebrates and invertebrates; the patients worked together to figure out which category each animal falls into.

In one lesson, patients were introduced to a few different species of sea star and were able to compare and contrast their features.

Seeing the lesson unfold makes it clear why the Ocean Institute partnership is so valued in the MHIC.

“The thought of bringing ocean life onto an inpatient mental health unit was new for me,” says Director of the MHIC Dani Milliken. “Luckily, Danelle was so amazing, kind and flexible as we walked through all of our dynamics and special needs. And now, we couldn’t be happier with how the program has fit into our unit. Patients absolutely love having the Ocean Institute visit, and the buzz of excitement lasts long after each session. Even our most isolative patients enjoy interacting with the animals and teachers.”

For patients on the unit, the visits are about much more than learning about the ocean.

“Having community members come onto an inpatient mental health unit and be side by side with patients, learning and growing with them, is truly remarkable,” says Milliken. “It has been such an incredible journey so far, and we are so lucky to have the Ocean Institute program here at CHOC for such a vulnerable population.”

To Hickman and the Ocean Institute team, the joy of the partnership comes through seeing the kids as future ocean stewards who deserve to learn, play and discover during their time at CHOC.

The program’s STEAM-based curriculum incorporates creative expression as an important part of the learning process.

“Our programs allow patients to be heard and show them that others outside the hospital care about their thoughts and feelings. The program content affords them a way to visually and creatively express themselves, making choices that support the unique artwork that they create. Discussing the ocean and the animals that live there provides a positive common ground from which to build confidence in a safe environment.”

The partnership has become so cherished on both sides that the Ocean Institute, thanks to a generous donor gift, is bringing the program to CHOC’s MHIC twice per month in 2020.

Learn more about the Ocean Institute and the Cherese Mari Laulhere Mental Health Inpatient Center.

CHOC earns $1 million grant to advance rare disease genome-editing therapy

With an aim of addressing a critical and unmet need in rare disease research, CHOC Children’s will advance rare disease genome editing therapeutics, thanks to a $1 million grant from The Larry and Helen Hoag Foundation.

The funding will help form CHOC Children’s Center for Advancing Rare disease Editing (CARE), allowing researchers to further their work to use genome editing to rapidly generate, characterize and treat preclinical models of rare disorders with known pathogenic mutations.

Genome editing therapy has the potential to permanently correct underlying pathogenic mutations in patients with some rare diseases. This treatment addresses the root cause of the disorder, eliminating the need for more standard therapies like enzyme replacement and stem cell transplantation that often require repeated treatments.

“CHOC is at the forefront of operating at the interface of translational research and clinical care of rare disorders,” said Brent Dethlefs, executive director of the CHOC Children’s Research Institute. “Our ultimate goal is to provide patients with rare diseases with an objective, rigorous assessment of whether genome editing therapy has the potential to advance their current standard of care.”

The work will build upon CHOC’s existing successes in developing preclinical models of rare diseases. For example, CHOC’s lysosomal storage disorders research team has already generated the first preclinical models of Pompe disease – a rare and fatal disorder that affects the heart and muscles – that are suitable for genome editing therapy and exhibit molecular, biochemical and functional analogy to patients with the severe infantile-onset form of the disease.

“Given the success of this project, we have received multiple inquiries from research colleagues seeking to collaborate and patient advocacy groups hoping to generate additional preclinical models of rare disease, but until now, we’ve never had the resources to participate,” CHOC scientist Dr. Jeffrey Huang said. “We believe that CARE has the potential for rapid growth given the intrinsic scalability of genome editing as a strategy to generate preclinical models and develop novel therapeutics.”

The Hoag Foundation funding complements a grant CARE recently received from the CHOC Children’s Foundation’s One Wish Grants awards. The grant awards unrestricted funds to outstanding ideas that drive advancement toward CHOC’s strategic goals.

The mission of The Larry and Helen Hoag Foundation is to educate, empower and create greater opportunity for at-risk children to become independent, productive and contributing members of society; support medical research and technology to enhance the health and well-being of children; and support such other compelling purposes that will enhance the quality of life for residents in Southern California.

Learn more about the CHOC Children’s Research Institute.